Clinical Trials for Cystic Fibrosis

[dasjsmum]

Hi

My son took part in the original hypertonic saline trials years ago. He thinks he was on the placebo which made his throat sore, so he pulled out of the trial. There was a lot of extra visits to the hospital involved in participating.

My son and daughter are planning on participating in the Vertex trials, which are not due to start until December. Given the feedback we've heard concerning previous vertex trials we're all pretty excited about it!

 

[dasjsmum]

Hi

My son took part in the original hypertonic saline trials years ago. He thinks he was on the placebo which made his throat sore, so he pulled out of the trial. There was a lot of extra visits to the hospital involved in participating.

My son and daughter are planning on participating in the Vertex trials, which are not due to start until December. Given the feedback we've heard concerning previous vertex trials we're all pretty excited about it!

 

[dasjsmum]

Hi

My son took part in the original hypertonic saline trials years ago. He thinks he was on the placebo which made his throat sore, so he pulled out of the trial. There was a lot of extra visits to the hospital involved in participating.

My son and daughter are planning on participating in the Vertex trials, which are not due to start until December. Given the feedback we've heard concerning previous vertex trials we're all pretty excited about it!

 

[dasjsmum]

Hi

My son took part in the original hypertonic saline trials years ago. He thinks he was on the placebo which made his throat sore, so he pulled out of the trial. There was a lot of extra visits to the hospital involved in participating.

My son and daughter are planning on participating in the Vertex trials, which are not due to start until December. Given the feedback we've heard concerning previous vertex trials we're all pretty excited about it!

 

[dasjsmum]

Hi
<br />
<br />My son took part in the original hypertonic saline trials years ago. He thinks he was on the placebo which made his throat sore, so he pulled out of the trial. There was a lot of extra visits to the hospital involved in participating.
<br />
<br />My son and daughter are planning on participating in the Vertex trials, which are not due to start until December. Given the feedback we've heard concerning previous vertex trials we're all pretty excited about it!

 

[lmattaway]

Ronnie,

I actually love clinic trials. I know, weird. I've done tons of them ever since I was little. Recently I've done Spiriva, Denufosol and I'm trying to get on the Vertex 809 trials. Here's my argument for clinical trials (climbs up on soapbox): The CF population isn't that big in the first place, so they need all the help they can get when it comes to testing new drugs/treatments. If we're not willing to participate in studies then we shouldn't complain that there aren't enough drugs or that they're not doing enough to find a cure. We have to play our part in helping. If we don't, who will? There's only so many of us. (gets down off soapbox)

That said... the other great thing about studies is that you often get PAID for them in addition to being seen on a regular basis for FREE and getting FREE equipment. The Denufosol study I did gave me two brand new compressors/nebs plus a travel battery pack and tons of tubing/pipes etc. And now that the actual double blind portion is over, I'm on the real drug FOR FREE for the next year while they follow me.

I rarely ever see a downside to participating in trials. The potential benefits always far outweigh the risks for me. It's my way of doing my part to find a cure.

 

[lmattaway]

Ronnie,

I actually love clinic trials. I know, weird. I've done tons of them ever since I was little. Recently I've done Spiriva, Denufosol and I'm trying to get on the Vertex 809 trials. Here's my argument for clinical trials (climbs up on soapbox): The CF population isn't that big in the first place, so they need all the help they can get when it comes to testing new drugs/treatments. If we're not willing to participate in studies then we shouldn't complain that there aren't enough drugs or that they're not doing enough to find a cure. We have to play our part in helping. If we don't, who will? There's only so many of us. (gets down off soapbox)

That said... the other great thing about studies is that you often get PAID for them in addition to being seen on a regular basis for FREE and getting FREE equipment. The Denufosol study I did gave me two brand new compressors/nebs plus a travel battery pack and tons of tubing/pipes etc. And now that the actual double blind portion is over, I'm on the real drug FOR FREE for the next year while they follow me.

I rarely ever see a downside to participating in trials. The potential benefits always far outweigh the risks for me. It's my way of doing my part to find a cure.

 

[lmattaway]

Ronnie,

I actually love clinic trials. I know, weird. I've done tons of them ever since I was little. Recently I've done Spiriva, Denufosol and I'm trying to get on the Vertex 809 trials. Here's my argument for clinical trials (climbs up on soapbox): The CF population isn't that big in the first place, so they need all the help they can get when it comes to testing new drugs/treatments. If we're not willing to participate in studies then we shouldn't complain that there aren't enough drugs or that they're not doing enough to find a cure. We have to play our part in helping. If we don't, who will? There's only so many of us. (gets down off soapbox)

That said... the other great thing about studies is that you often get PAID for them in addition to being seen on a regular basis for FREE and getting FREE equipment. The Denufosol study I did gave me two brand new compressors/nebs plus a travel battery pack and tons of tubing/pipes etc. And now that the actual double blind portion is over, I'm on the real drug FOR FREE for the next year while they follow me.

I rarely ever see a downside to participating in trials. The potential benefits always far outweigh the risks for me. It's my way of doing my part to find a cure.

 

[lmattaway]

Ronnie,

I actually love clinic trials. I know, weird. I've done tons of them ever since I was little. Recently I've done Spiriva, Denufosol and I'm trying to get on the Vertex 809 trials. Here's my argument for clinical trials (climbs up on soapbox): The CF population isn't that big in the first place, so they need all the help they can get when it comes to testing new drugs/treatments. If we're not willing to participate in studies then we shouldn't complain that there aren't enough drugs or that they're not doing enough to find a cure. We have to play our part in helping. If we don't, who will? There's only so many of us. (gets down off soapbox)

That said... the other great thing about studies is that you often get PAID for them in addition to being seen on a regular basis for FREE and getting FREE equipment. The Denufosol study I did gave me two brand new compressors/nebs plus a travel battery pack and tons of tubing/pipes etc. And now that the actual double blind portion is over, I'm on the real drug FOR FREE for the next year while they follow me.

I rarely ever see a downside to participating in trials. The potential benefits always far outweigh the risks for me. It's my way of doing my part to find a cure.

 

[lmattaway]

Ronnie,
<br />
<br />I actually love clinic trials. I know, weird. I've done tons of them ever since I was little. Recently I've done Spiriva, Denufosol and I'm trying to get on the Vertex 809 trials. Here's my argument for clinical trials (climbs up on soapbox): The CF population isn't that big in the first place, so they need all the help they can get when it comes to testing new drugs/treatments. If we're not willing to participate in studies then we shouldn't complain that there aren't enough drugs or that they're not doing enough to find a cure. We have to play our part in helping. If we don't, who will? There's only so many of us. (gets down off soapbox)
<br />
<br />That said... the other great thing about studies is that you often get PAID for them in addition to being seen on a regular basis for FREE and getting FREE equipment. The Denufosol study I did gave me two brand new compressors/nebs plus a travel battery pack and tons of tubing/pipes etc. And now that the actual double blind portion is over, I'm on the real drug FOR FREE for the next year while they follow me.
<br />
<br />I rarely ever see a downside to participating in trials. The potential benefits always far outweigh the risks for me. It's my way of doing my part to find a cure.

 

[KrazyKat]

Lindsay - Although i agree with your comments completely, spare a thought for those of us who simply never get the opportunity to partake in a medical trial. I'd kill for a lookin to some of these drugs, but over here, we have next to nothing available, compared to what you lot in the US/Canada have. We don't even get a vest over here - oh no, New Zealand 'experts' found the one trial out of thousands that said PEP therapy is just as effective as the vest and so PEP is all we get, saving them thousands of dollars but costing us, not that they give a damn. I'd rather pay for health insurance and get decent care, and all available drugs, it would also be nice if we trialed some of these drugs over here, but we don't. You guys don't realise how good you have it compared to some of us.

 

[KrazyKat]

Lindsay - Although i agree with your comments completely, spare a thought for those of us who simply never get the opportunity to partake in a medical trial. I'd kill for a lookin to some of these drugs, but over here, we have next to nothing available, compared to what you lot in the US/Canada have. We don't even get a vest over here - oh no, New Zealand 'experts' found the one trial out of thousands that said PEP therapy is just as effective as the vest and so PEP is all we get, saving them thousands of dollars but costing us, not that they give a damn. I'd rather pay for health insurance and get decent care, and all available drugs, it would also be nice if we trialed some of these drugs over here, but we don't. You guys don't realise how good you have it compared to some of us.

 

[KrazyKat]

Lindsay - Although i agree with your comments completely, spare a thought for those of us who simply never get the opportunity to partake in a medical trial. I'd kill for a lookin to some of these drugs, but over here, we have next to nothing available, compared to what you lot in the US/Canada have. We don't even get a vest over here - oh no, New Zealand 'experts' found the one trial out of thousands that said PEP therapy is just as effective as the vest and so PEP is all we get, saving them thousands of dollars but costing us, not that they give a damn. I'd rather pay for health insurance and get decent care, and all available drugs, it would also be nice if we trialed some of these drugs over here, but we don't. You guys don't realise how good you have it compared to some of us.

 

[KrazyKat]

Lindsay - Although i agree with your comments completely, spare a thought for those of us who simply never get the opportunity to partake in a medical trial. I'd kill for a lookin to some of these drugs, but over here, we have next to nothing available, compared to what you lot in the US/Canada have. We don't even get a vest over here - oh no, New Zealand 'experts' found the one trial out of thousands that said PEP therapy is just as effective as the vest and so PEP is all we get, saving them thousands of dollars but costing us, not that they give a damn. I'd rather pay for health insurance and get decent care, and all available drugs, it would also be nice if we trialed some of these drugs over here, but we don't. You guys don't realise how good you have it compared to some of us.

 

[KrazyKat]

Lindsay - Although i agree with your comments completely, spare a thought for those of us who simply never get the opportunity to partake in a medical trial. I'd kill for a lookin to some of these drugs, but over here, we have next to nothing available, compared to what you lot in the US/Canada have. We don't even get a vest over here - oh no, New Zealand 'experts' found the one trial out of thousands that said PEP therapy is just as effective as the vest and so PEP is all we get, saving them thousands of dollars but costing us, not that they give a damn. I'd rather pay for health insurance and get decent care, and all available drugs, it would also be nice if we trialed some of these drugs over here, but we don't. You guys don't realise how good you have it compared to some of us.

 

[lmattaway]

KK,
I feel very blessed to have been born in the states. It kills me that CF care isn't up to the same standards everywhere. Especially when I hear the stories coming out of Ireland. I wonder why trials happen more often here. I'm sure there are laws and procedures that dictate all of it, but you guys could benefit so much from them. Hopefully raising awareness will help to level the playing field someday.

 

[lmattaway]

KK,
I feel very blessed to have been born in the states. It kills me that CF care isn't up to the same standards everywhere. Especially when I hear the stories coming out of Ireland. I wonder why trials happen more often here. I'm sure there are laws and procedures that dictate all of it, but you guys could benefit so much from them. Hopefully raising awareness will help to level the playing field someday.

 

[lmattaway]

KK,
I feel very blessed to have been born in the states. It kills me that CF care isn't up to the same standards everywhere. Especially when I hear the stories coming out of Ireland. I wonder why trials happen more often here. I'm sure there are laws and procedures that dictate all of it, but you guys could benefit so much from them. Hopefully raising awareness will help to level the playing field someday.

 

[lmattaway]

KK,
I feel very blessed to have been born in the states. It kills me that CF care isn't up to the same standards everywhere. Especially when I hear the stories coming out of Ireland. I wonder why trials happen more often here. I'm sure there are laws and procedures that dictate all of it, but you guys could benefit so much from them. Hopefully raising awareness will help to level the playing field someday.

 

[lmattaway]

KK,
<br /> I feel very blessed to have been born in the states. It kills me that CF care isn't up to the same standards everywhere. Especially when I hear the stories coming out of Ireland. I wonder why trials happen more often here. I'm sure there are laws and procedures that dictate all of it, but you guys could benefit so much from them. Hopefully raising awareness will help to level the playing field someday.